When ill with any condition it can become very easy to allow yourself to be wrapped up in the negativity of it all. Recently I slipped, I fell off the positivity bandwagon if you will. I don’t think this slip is necessarily a bad thing. After all it is only natural that in life we have our highs and lows. Ironically it was Dystonia that reminded me to try and see the positive that does exist within and around the condition again.
My left arm and shoulder spasms/twitches rather violently, flinging itself out to the side. I always hope silently whenever this happens that nobody is within hitting range. I have had one to many awkward apology conversations following such a spasm. It was following a rather forceful one in a hospital Costa last week that I found myself out of my chair and on the floor, slightly stunned, sore and in a complete fit of giggles. A small part of me knew that one flailing arm had tried to grab the table, in a useless uncoordinated attempt to stabilise myself.
This incident was exactly what I needed to break the haze of negativity that I had cocooned myself up in since my Complex Regional Pain Syndrome diagnosis. I had forgotten to tackle this condition with the same approach I had the others. I was frankly too scared, I know how bad the pain can get and even though I am not at the same pain score I was in 09, mentally I jumped ship. Embarrassing myself by ending up on a busy Costa shop floor was the exact laughter filled wake-up call I needed. As much I crave a life without chronic illness, my Dystonia never fails to provide laughter, I’ll give it that much.
My little Dystonia alien has been a right pickle to put it politely, for the last two days. It is doing a new spasm, which whilst I can bear it at first eventually becomes agonising. It’s one of those spasms that makes me welcome the bliss of unconsciousness that my non epileptic seizures bring. During the seizures I am completely out of it and unaware of any pain, whilst normally I hate these seizures the last two days they have been a welcome and needed break from the spasm.
My normal method of using a TENS machine, massaging the spasming muscle etc have not made a difference to this spasm. Therefore I have relied on topical medications such as volterol and oral medications such as Tramadol and Diazepam, to help me through the spasms.
Whilst these are not the best pictures you get the idea of what the spasms were doing. I am not sure what triggered this spasm to develop and am hoping that my body is fighting a bug and that is why my Dystonia is playing up. Illness always seem to worsen my Dystonia, which in this case would be a nice reality compared to the horrid thought of the spasm being here on a daily basis.
I am determined to stay positive and am focusing on all the fantastic activities starting next week, such as riding, and my reflexology training. I am extremely excited as I have had an email saying my text books are on their way. I love burying myself in a textbook so I’m looking forward to their arrival.
I am hoping that the spasms will stay away for the rest of the night so that I shall get a good nights sleep as I am completely exhausted. It is amazing how tiring being in pain is.
Yesterday I phoned the Breakspear hospital in Hemel Hempstead which has a reputation for being fantastic at treating Lyme Disease. It is unfortunately a private hospital so is costly, however my health means a lot more to me than money. I spoke to one of their patient liaison officers about what I was aiming to get from the appointment, specifically the information I need as to exactly what medication I need to be taking and in what form, such as oral or intravenous, so that I can go back to my GP and ask to have the treatment done on the NHS. The P.L.O reassured me that they could tell me all of this in the appointment and that it was up to me where I seek treatment afterwards. I am hoping the NHS will treat me but if not I shall use this hospital. I am very lucky that I don’t live very far away from it.
As I did not want any tests done whilst I was there they are able to see me on the 7th August. This is fantastic as they originally offered me an appointment for the end of September. I am slowly composing a list of questions for the Specialist, as I do not want to forget to ask something vital whilst I am there. I am really looking forward to this appointment and hope it will be all I want it to be.
This morning i went blind and as usual due to the pain it triggered off a seizure. Unfortunately I was sitting a little too close to the edge of the bed and seized off it on to the floor. I think I hit my head on my scales as when I came round my head was really throbbing. My body did not take kindly to my fall and has since played up for the rest of the day.
This evening my poor mother has spent hours in my bedroom looking after me and preventing me from having another fall whilst my whole body spasmed and I had many seizures. My Non Epileptic Seizures really take it out of me, and as a result they leave me wanting to just curl up in a ball and go to sleep. Tonight I am feeling more tired than usual but I think this is because I had to take a diazepam to try to control my spasms and seizures.
Despite my body misbehaving today I am still on a high from Tuesdays consultant appointment and from the excitement from my upcoming appointment with a Lyme Disease Specialist. Things are finally looking a bit better!
Every day I have plenty of spasms. Some are short and not to bad, others last hours and cause agony, and some simply make me laugh due to the positions I find myself in, for example I once ended up doing the splits! Thankfully the muscle relaxant that my GP put me on has helped and has slightly reduced the frequency and intensity of these spasms.
Earlier this afternoon my whole body decided to spasm, it was slightly painful and was not the most comfortable position to be in, but despite that I managed to laugh through it with my mum. Knowing that the spasm would eventually release was a big comfort and made it more bearable. I have included some pictures of the spasm below, in them you can see that my eyes, neck, arms, stomach and leg are all in spasm.
In today’s culture people often seem to want to focus on what we cannot do rather than celebrate what we are able to do. Even the term Disabled focuses on it. I don’t like being labelled but if I have to be then I would rather be termed as Differently Able, as I am capable of doing the same things as any body else, it might just take me longer, I may even do it slightly differently but at the end of the day I can still do it!
One of my symptoms causes me to go blind. My eyes go into spasm and my eyeballs roll upwards in their sockets. Being blind on and off has taught me to appreciate the beauty that surrounds me in daily life. I previously took my sight for granted, the day I went blind for the first time terrified me, I was having a big panic that I would not be able to read again. Now when I am able to read I appreciate the ability more than ever before. Control of our bodies and good health is such a precious but fragile gift that people tend to abuse. We need to open our eyes to the world and learn to appreciate what we have. Society needs to understand the gifts that senses such as sight brings us and learn to focus on the positive side of things.
I could easily allow myself to drown in a pool of negativity but by focusing on the little things in life like being able to see, and by pushing myself to achieve what ever I set my mind to, I am able lead a positive life. I have my moments of being down, just like everyone does but I wont ever let having Dystonia beat me.
I am in such a fantastic mood! Today, after about 8/9 weeks of not being allowed to ride due to Non Epileptic Seizures, I finally got to get back on Connie. It was a fantastic riding lesson, and Connie was perfect as usual! I feel so confident when riding her, and really enjoyed every second of the lesson. I had been worried about the lesson, as my dystonia had spread since the last time I rode. However I need not of worried as my body behaved itself and I managed to do everything with ease.
I am completely and utterly exhausted but in bliss at the moment. The last few days have been great! My tea party was a fantastic success, the Go Blue Movement is going incredibly well and so far I have raised over £662 for the Dystonia society! It has just been the most amazing couple of days. It has all been so positive and I have been so overwhelmed by how successful it has all been.
Yesterday I had a lesson booked with the R.D.A, I was a bit nervous about this due to the new tremor in my leg. I had emailed my instructor in advance to let her know that it may be slightly more difficult than usual to get me on. Her reply made me grin “Tremor or no tremor, we will give it our best shot”! She stuck true to her words, they gave it their best shot and managed to get me on! I hopped up the mounting block, then with my arms round two volunteers shoulders they lifted me up on to Connie so that I was sitting side saddle, I then swung my Dystonic leg over Connie’s neck and slid my feet into the stirrups.
After about a minute of having my feet in the stirrups my right leg decided to spasm, it shot out sideways and upwards. The volunteers and my instructors remained very calm and Connie did not even notice. Thankfully it was not a long spasm, once it had passed we agreed that until my leg had settled down completely, I would ride without the stirrups. I was completely fine with this, and happily rode round without them. After a while, when I was certain it was OK to risk putting my feet back in stirrups, I did so, this time my body did not react.
My riding instructor does fantastic lessons, and I was allowed to do a lot more trotting this time. We did trotting in general, trotted in and out of cones and over poles, it was complete heaven! The three volunteers that stayed beside me, kept saying that you would never know I was disabled if you watched me ride, as I sat so well and had good control. I must admit them saying this really made my day! I have to have three people around me at the moment when I ride, due to my Non Epileptic Seizures, as I only had my last one a few weeks ago, so we have to play it safe.
I cannot put into words that happiness that riding gives me. I literally sit and grin the whole time I am riding, taking in every magical second of it! I cannot wait until next weeks lesson!
Last night I also attended my support/research group. I love these meetings, they are so mad and positive that I just there and smile. Despite both my leg and arm playing up whilst I was there, I had a fantastic time. The group is extremely supportive and I find that the different methods we are taught for coping with pain are extremely helpful.
Overall yesterday was an absolutely brilliant day. It was so worth the aches I have today. Despite the aches, if you put a horse in front of me now, I would still try and get on!
This evening I went to a group that my GP signed me up for. It is designed for people with chronic pain symptoms, to help give them coping mechanisms that they can learn to use in daily life. The group is also for research so we were asked to answer questions, and give them our life and medical history, so that they can compare the results the group gets at the end of the 12 sessions to the answers provided at the beginning.
At the start, I must admit I was a bit dubious about the group, the leader seemed a bit mad, and everyone there was a fair bit older than me. I was also concerned with how much I would be able to take part in, as I am in wheelchair. However by the end of tonight’s session my concerns were long gone. I had managed to take part in everything, when they did walking activities, I copied their upper body movements, and swayed about in the chair. The other people their were lovely and I have a good giggle with them all. We also focused on our posture and did breathing exercises which I found to be very relaxing. The two hours flew by, and I cannot wait for the next session!
Today has been a rather positive day. After six hours of calling, I finally managed to get hold of my Consultants Secretary, who has promised to chase him, and have him contact me ASAP, I am hopeful that he will, but I shall just have to wait and see. I have had no Non Epileptic Seizures at all today which is fantastic and my head and body are feeling much better.
My local Riding for the Disabled stable phoned me today, and as long as my Non Epileptic Seizures stay calm, then I shall hopefully have my first RDA lesson next week! I am rather excited!
The last few days have been full of positivity! Which has put a smile back on my face. The other day I paid my local riding stable a visit. Once a week for a couple of hours they run lessons for the disabled. They assessed me whilst I was there and have said that after Christmas I can join! I was of course extremely excited. I then watched one of the RDA lessons, so I could get a feel for how the lessons were run, I had a smile across my face the whole time. I love horse riding! The only issue that the instructors can see at the moment, is getting me on the horse without my leg going into spasm, however they have thought of a couple of different ways to get on me. Personally I’m hoping that my sheer determination to back on a horse will enable me to do it perfectly :p.
Yesterday my jaw spasm relaxed partially!!! It had relaxed enough for me to eat solid food and talk more clearly, only my lip remained odd. In the evening I had my usual extreme Jaw spasms and seizures, which had worried me that I would wake up today with my jaw back in spasm, but I need not have worried, today it is still relaxed. I could dance with happiness!
This last week, has for me, been full of thoughts to chew on. This week, there has been many programmes on for Stand up to Cancer, all of them heart wrenching yet inspirational.These people have to live with a disease that may or may not kill them, their life is a huge unknown. Yet despite having this devastating illness, having to go through emotionally and physically painful treatment, and so much more, they hold their heads high and they try to live their lives to the fullest. They are truly inspirational.
This weekend particularly, I have thought about them. How much they have to cope with, the pain they must deal with. Over this weekend both my facial and foot spasms have played up. They have been both painful and debilitating. Yet I know that none of the games the dystonia alien plays will cause me any long-lasting harm. They are simply irritating and painful. A nuisance, that I must and will learn to put up with.
I have to count my lucky stars and be thankful. I may have a disease that is currently incurable, that causes pain, embarrassment and is debilitating, but with the right treatment my symptoms could be dramatically improved. My illness will not kill me. It has changed the path I was on but it will make me stronger for it. I have to be thankful for the disease I have. My life could be so much worse.
I have never been a flexible person. The only part of my body that is flexible is my arms and wrists. However last night the little dystonia alien decided to show me just what it could make my body do. For a few hours before my dinner, my leg had been playing up a bit, my foot was bent and was dragging behind me. However during dinner it seemed to calm down and I relaxed. When I tried to get up from the table and hop to the living room, with my mum helping me, the dystonia alien decided to wake up. Before I could brace myself, my leg went into a spasm, sliding itself backwards. My stepbrother fetched a chair for me to sit on, so that I didn’t fall down. Yet my leg kept going backwards. Within minutes I had no choice, I had to either try to slide myself off the chair and onto the floor or have the spasm cause me to fall onto the floor. By the time I was on the floor, I was literally doing the splits. Despite being in agony, I had to laugh, I am not flexible, yet here I was on the floor in spasm doing the splits.
Eventually the spasm eased off and with the help of my Grandmother and my Mum, I got up off the dining room floor, and tried to hobble through to the living room. However the dystonia alien had not finished playing games. My right leg and foot shot behind my left leg. To those around me, it must have looked like I was curtsying. Yet again I ended up on the dining room, the spasm had pulled my leg as far as it could go. Again I ended up laughing. I am not sure whether I laughed because of the situation or if I laughed in exasperation, perhaps it was a bit of both. It took a fair length of time for the spasm to ease off.
I still cannot get over how far my dystonia pulled my leg and foot last night! The spasms in my leg and foot have always been pretty extreme and odd to look at, but last night was ridiculous. I now wish I had gotten someone to take a picture/video the spasm so I could show the specialist, I shall remember to ask someone to do so next time. Despite last nights spasms being so extreme, I feel rather positive today! I surprised myself at how well I coped with the pain of the spasms last night, especially with them being so extreme. I feel that with each spasm the dystonia alien throws at me, I gain more confidence, as I know that I can deal with my spasms fairly well.
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